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Showing posts from June, 2019

15 - Tales From My Grandmother

Why Grandmother, what sharp teeth you have!      This post isn't about Porcelain, but about her grandmother. She learned the difficult struggle that her grandmother, Amalea, had led. She was also born with EPP, not that any in the 1920s knew what that was, much less how to treat it properly. Her future would prove to be a long, and bumpy road..      Amalea was 3 years old when the first reaction happened. Her family knew what was going on, and took precautions immediately. The hellish experience really began about the time she started school. Teachers either wouldn't listen or didn't care. She would often end up in the hospital, and catch every cold she came in contact with because her immune system kept dwindling from sun exposure. Her childhood was riddled with doctors visits and constant misdiagnoses. Her family tried to be advocates, but in the 20s, not a lot of doctors really cared what parents thought.      At the age of 12, Amalea left school as did most girl

Intermission - Porphyria, The Great Mimicker

Intermission: Porphyria, the great mimicker of other diseases, and other diseases and disorders that mimic porphyria. Disclaimer: By no means is this a complete list!      Many diseases and disorders can mimic the 8 types of Porphyria. When you get diagnosed as one of these, and you know you are unlikely to have one of them, remember to ask yourself, what if it is porphyria? What if it's not porphyria? Testing is better safe than sorry if you know in your heart it might not be what you're diagnosed with. Always get second and third opinions. The list: *compiled by many people - not all my work. The internet is amazing.* Aortic Stenosis - tachycardia, hypertension, chest pains, shortness of breath, fatigue Appendicitis Autoimmune Atrophic Gastritis Crohn's Disease Colitis Cyclical Vomiting Syndrome Diabetes Diverticulitis (you can also develop this with Porphyria and constipation issues) Dystrophic Epidermolysis Bullosa Endometriosis  Ergot poisoning Fam

14 Into The Great Wide Open Workforce

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Ah to be an adult. This is a perfect story for Summer!      After graduation, Porcelain still lived at home, as it was customary to stay at home as long as you wanted in an Italian family, though she did contribute. She babysat quite abit, pet sat and even did some dog walking in the evening hours. It wasn't much, but it was enough. She wasn't quite sure what kind of jobs she could work that wouldn't require her to be in sunlight or harsh lights, so she was a bit skittish of the workforce.    She had an opportunity to get a '9-5' job at a local Italian restaurant as a hostess/kitchen helper. She loved the idea and accepted immediately. Not long into the job, she discovered a love for customer service, she really connected with the people, and felt passionate about her work. Then came the downsides.... It started out small, little pinprick pains in her eyes.      She assumed it was tension headaches and drank some herbal tea for it. Porcelain didn't sus

Featured!

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I was featured again. *Feeling grateful* I saw that I was listed on the Vampire Fragments website again, for May 2019! Oh my goodness! Thank you to Vampire Fragments! You can visit Vampire Fragments here: http://www.vampirefragments.com/news_2019-05.php

13 - Sweet Freedom

Finally free from torture!      Porcelain's school life was over. No more harsh lights that caused migraines, no more having to sit inside while everyone went out for class on a nice day, and no more dealing with people that just didn't understand. Little did she realize the adult world would be even less forgiving. Doctors would continue to try diagnosing her with problems she didn't have, ignoring the obvious signs of EPP. People would always assume she was making excuses for not getting in sun. She just didn't understand how so many people could be so ignorant to another's disability, and be okay with that!      Walking down that aisle felt like the biggest accomplishment she'd ever achieved. Graduating with honors and an associates of history degree, thanks to AP classes offered at her school through the local college. She used this for self-employment, as well as being a self-taught artist. Living at home helped, because she didn't have to wor

12 - Girls Just Wanna Have Fun

Party time!      It was always 'grand central station' at Porcelain's house. She and her sister had their friends over all the time! Their family had barbeques and parties for every holiday, but their favorites were the Halloween parties. Italian families tended to celebrate all of life's moments as well. Porcelain even had a summer Luau for her birthday every year.      She felt like the summer nights belonged to her. Bonfires happened every weekend of summer. She mastered billiards at her local pool hall. She would also go with her friends to the movies and the mall in the city, cruise the 'strip' in town blaring music and waving to the other teens doing the same. That was all the rage back then!      When Porcelain turned 16, she met her best friend. This girl would stick with her through thick and thin as they grew older. They were like sisters and inseparable! We'll call her Daedra. They shared so many secrets and made many memories together! Wh